› Forums › General Melanoma Community › I assume this is my spine tumors causing issues?
- This topic has 27 replies, 5 voices, and was last updated 11 years, 2 months ago by
arthurjedi007.
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- November 28, 2014 at 8:11 pm
I think I know but I would like to ask. Basically for Thanksgiving I made it to my sister's. But for the bathroom I had to go up 6 steps. Fortunately they have hand rails so I fell slowly. On the 6th step my lower spine and left hip lost all feeling and strength so I went down. After a minute I was able to walk ok again it just scared me a lot.
About 6 weeks ago I was doing my couple mile walks just fine. Then all of a sudden my left lower leg felt odd and I hobbled home. I haven't been able to walk right since. When I walk for about a minute the left lower leg starts hurting, I walk more and the pain includes my knee as well, walk more and various spots in my left hip start hurting as well as the left side of my left upper leg, walk more and my entire hip and leg start hurting like crazy and I can only sit down. Also almost constantly just sitting my left lower leg hurts and many times my left hip as well.
So combining all that I assume it must be a tumor pressing on my spinal cord again that is about to make me paralyzed?
I say that because last February the tumor in my t10 vertebrae was according to the med onc doc a hairs breath from making me paralyzed. If it grew a hair in a certain direction that would happen. The surgeon doc said anyone with that much spinal cord damage who received it quickly would already be paralyzed. Also one lift, twist, turn, etc too many I would be paralyzed. They couldn't do surgery so I got 2nd radiation to the t10 in March.
I'm not sure what else could make my lower spine and hip go out like that. Granted the only time I had something similar was way back in October of 2012 when I was washing my hands and had to grab the sink because I couldn't stand for about a minute. Even that back in February I had no clue. Back then my back was a little sore and I couldn't bend very good but that was about it. Now though my back seems ok and I can still bring my feet up to tie my shoes so I can do that bending ok. So I dunno.
I really don't understand this though because they didn't mention anything with my 11/3 pet/ct other than I only had mild growth and no new stuff since 8/13. They did mention on 11/4 they thought the tumor at the end of my tibia in my knee was causing my leg issue and they gave 5mg oxycodone pain pills. They didn't want me to do anything about it though cause they thought I could get into NIH which I couldn't cause by 11/11 I was wheelchair except for walking a little around the house. Still they wanted me to wait untl 11/25 so they could talk about what to do. I was excepting my med onc to have all types of scans lined up and maybe some nerve specialist to see or something. Instead I see his nurse practioner who just says we need to get you walking good again so you can get in one of these trials. I say yes we do and then there's silence like she had no idea how to proceed. So I suggested maybe I should call my radiation doc and she said yes that would be great. So I see him Tuesday at 3. He's the one that kept me from being paralyzed last March. I think I'll just write up all the symptoms so there will be no misunderstandings when they ask me what's wrong.
Artie
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- November 29, 2014 at 12:30 pm
You are your own best advocate artie. Write all those symptoms down and make sure the Drs listen carefully. I get the feeling sometimes the doctors are only guessing but the good ones know to follow your instincts and check everything out. Good luck and hope all goes well with the radiologist
Jubes
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- November 29, 2014 at 12:30 pm
You are your own best advocate artie. Write all those symptoms down and make sure the Drs listen carefully. I get the feeling sometimes the doctors are only guessing but the good ones know to follow your instincts and check everything out. Good luck and hope all goes well with the radiologist
Jubes
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- November 29, 2014 at 12:30 pm
You are your own best advocate artie. Write all those symptoms down and make sure the Drs listen carefully. I get the feeling sometimes the doctors are only guessing but the good ones know to follow your instincts and check everything out. Good luck and hope all goes well with the radiologist
Jubes
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- November 29, 2014 at 5:28 pm
Thanks Jubes. Yeah just one more part of the battle to go through and yet again I have to push for it myself. lol
Artie
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- November 29, 2014 at 5:28 pm
Thanks Jubes. Yeah just one more part of the battle to go through and yet again I have to push for it myself. lol
Artie
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- November 29, 2014 at 5:28 pm
Thanks Jubes. Yeah just one more part of the battle to go through and yet again I have to push for it myself. lol
Artie
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- November 29, 2014 at 12:30 pm
You are your own best advocate artie. Write all those symptoms down and make sure the Drs listen carefully. I get the feeling sometimes the doctors are only guessing but the good ones know to follow your instincts and check everything out. Good luck and hope all goes well with the radiologist
Jubes
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- November 29, 2014 at 12:30 pm
You are your own best advocate artie. Write all those symptoms down and make sure the Drs listen carefully. I get the feeling sometimes the doctors are only guessing but the good ones know to follow your instincts and check everything out. Good luck and hope all goes well with the radiologist
Jubes
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- November 29, 2014 at 12:30 pm
You are your own best advocate artie. Write all those symptoms down and make sure the Drs listen carefully. I get the feeling sometimes the doctors are only guessing but the good ones know to follow your instincts and check everything out. Good luck and hope all goes well with the radiologist
Jubes
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- November 29, 2014 at 9:30 pm
Gosh Artie!!!
The hits just keep coming, don't they? I don't really know what to tell you. BUT…I do think that you are being your strong proactive self as always and as Jubes noted…that is awesome…and, unfortunately, essential. So, keep it up. I am glad you have the appointment on Tuesday. I do think writing up the events and your understanding of various scans in chronological order will be helpful to your doc in figuring things out and keep you from being side tracked from reporting important incidents during the course of the visit. Keep hanging tough. I look forward to hearing what they think after your visit. Yours, C
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- November 29, 2014 at 9:30 pm
Gosh Artie!!!
The hits just keep coming, don't they? I don't really know what to tell you. BUT…I do think that you are being your strong proactive self as always and as Jubes noted…that is awesome…and, unfortunately, essential. So, keep it up. I am glad you have the appointment on Tuesday. I do think writing up the events and your understanding of various scans in chronological order will be helpful to your doc in figuring things out and keep you from being side tracked from reporting important incidents during the course of the visit. Keep hanging tough. I look forward to hearing what they think after your visit. Yours, C
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- November 29, 2014 at 9:30 pm
Gosh Artie!!!
The hits just keep coming, don't they? I don't really know what to tell you. BUT…I do think that you are being your strong proactive self as always and as Jubes noted…that is awesome…and, unfortunately, essential. So, keep it up. I am glad you have the appointment on Tuesday. I do think writing up the events and your understanding of various scans in chronological order will be helpful to your doc in figuring things out and keep you from being side tracked from reporting important incidents during the course of the visit. Keep hanging tough. I look forward to hearing what they think after your visit. Yours, C
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- November 29, 2014 at 10:49 pm
Thank you Celeste. I really hope it is just the tumor in the knee but probably not. We shall see.
Artie
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- November 29, 2014 at 10:49 pm
Thank you Celeste. I really hope it is just the tumor in the knee but probably not. We shall see.
Artie
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- November 29, 2014 at 10:49 pm
Thank you Celeste. I really hope it is just the tumor in the knee but probably not. We shall see.
Artie
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- November 30, 2014 at 2:28 am
I'm so sorry to hear you're having trouble again. I wish I knew what to say to you. Can you remind me- it's been too long since I've been able to participate on this board- are you on PD-1? If you are, it could be that the tumors are "growing" in preparation for dying. I've had several do that since I started PD-1 including the ones in my brain that resulted in a craniotomy in September. Ipi also has a reputation for doing that (growth before death).
Having also had a T10 lesion I do understand the pain and nervousness that comes with tumors in the spinal column, but I have not had to deal with mets in other bones, so I'm no help for you there.
I wish you the very best of luck and hope you get some answers and success soon
-Eva
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- November 30, 2014 at 2:28 am
I'm so sorry to hear you're having trouble again. I wish I knew what to say to you. Can you remind me- it's been too long since I've been able to participate on this board- are you on PD-1? If you are, it could be that the tumors are "growing" in preparation for dying. I've had several do that since I started PD-1 including the ones in my brain that resulted in a craniotomy in September. Ipi also has a reputation for doing that (growth before death).
Having also had a T10 lesion I do understand the pain and nervousness that comes with tumors in the spinal column, but I have not had to deal with mets in other bones, so I'm no help for you there.
I wish you the very best of luck and hope you get some answers and success soon
-Eva
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- November 30, 2014 at 2:28 am
I'm so sorry to hear you're having trouble again. I wish I knew what to say to you. Can you remind me- it's been too long since I've been able to participate on this board- are you on PD-1? If you are, it could be that the tumors are "growing" in preparation for dying. I've had several do that since I started PD-1 including the ones in my brain that resulted in a craniotomy in September. Ipi also has a reputation for doing that (growth before death).
Having also had a T10 lesion I do understand the pain and nervousness that comes with tumors in the spinal column, but I have not had to deal with mets in other bones, so I'm no help for you there.
I wish you the very best of luck and hope you get some answers and success soon
-Eva
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- November 30, 2014 at 5:02 pm
Thanks Eva. Yeah I got my 10th dose of keytruda pd1 last Tuesday. Good thing it got FDA approved or being in a wheel chair they probably would have turned me away back when I was taking it in the EAP trial. At least I can still walk across the room fairly ok.
Artie
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- November 30, 2014 at 5:02 pm
Thanks Eva. Yeah I got my 10th dose of keytruda pd1 last Tuesday. Good thing it got FDA approved or being in a wheel chair they probably would have turned me away back when I was taking it in the EAP trial. At least I can still walk across the room fairly ok.
Artie
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- November 30, 2014 at 5:02 pm
Thanks Eva. Yeah I got my 10th dose of keytruda pd1 last Tuesday. Good thing it got FDA approved or being in a wheel chair they probably would have turned me away back when I was taking it in the EAP trial. At least I can still walk across the room fairly ok.
Artie
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- December 1, 2014 at 2:58 pm
You know I am going to say the same thing Artie. My really bad node blew up around the 10th or 11th treatment of Pembro/Keytruda. It became very big and very painful. It felt like I was being stabbed repeatedly every 5-10 seconds for 24 hours. Then the following day it had grown so much so, that it was hanging out of me like a baseball just trying to get out of my arm pit.
The doctors did not warn me of this as a possibility of happening. I was a mess. I packed a bag and thought I needed to head to the ER for immediate surgery. The doctor then called and said that they think that this was the tumor dying. To take Tylenol and just wait it out until I could see them in a day or so….and wait for my scan the following week.
It was crazy…and I thought they were crazy to even think nothing was wrong. I was experiencing stabbing horrific pains…and you tell me to pop some Tylenol?!?!?! To me, they were nuts. And the Tylenol did nothing for the stabbing pains. But those pains stopped after 24 hours and the within two days the tumor was back inside of me. My doctors were shocked at how fast my tumor shrank back down from hanging out of me. They said that when the drug usually blows up a tumor, it usually takes several weeks for it to shrink back down, not just two days. For me, I tend to think that my healthy diet made a lot of difference there….with the speedy shrinking. At that time I was only eating mostly 80% raw fruits and veggies. No inflammatory or acidic foods. No dairy or meat or refined sugars. I of course do not know why it was such a speedy recovery, but I believe that is why.
I went into everything blind with this stage 4 disease. I didn't even know this site existed for my first year and a half of this diagnosis (I was diagnosed in Oct 2012.) I never went on the internet to investigate anything about Melanoma or the drug trials until a year after my diagnosis. I don't know why it didn't occur to me to do so, but for some reason I just focused on what I could do to reverse this disease. And for me that was to spend all my time going on the internet and investigating ways to reverse disease naturally and try and fix it myself.
Everyone is different. And back in 2012, so little was known about Pembro/Keytruda and how it would work in humans. So I took it upon myself to think that it wouldn't work, and that the only way for me to fix this was to be as healthy as possible and stop digesting so many bad foods and chemicals.
Anyway, I really hope that you are just experiencing the same blowing-up of the tumor and that it is just on its way to dying. 🙂 All my best on your appointment tomorrow Artie.
Laurie
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- December 1, 2014 at 5:37 pm
Thanks Laurie. I hope that's it. But since this tumor in my tibia bone at my knee has been hurting for over 6 weeks I think it might just be one of the tumors the pd1 has not got in line yet. They hadn't scanned that area since way before I started pd1 so dunno when it showed up or how big it used to be. I just hope it is just that tumor and not the ones in my spine. They told me those are shrinking so I hope it is just the one in the knee. That would be great.
Artie
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- December 1, 2014 at 5:37 pm
Thanks Laurie. I hope that's it. But since this tumor in my tibia bone at my knee has been hurting for over 6 weeks I think it might just be one of the tumors the pd1 has not got in line yet. They hadn't scanned that area since way before I started pd1 so dunno when it showed up or how big it used to be. I just hope it is just that tumor and not the ones in my spine. They told me those are shrinking so I hope it is just the one in the knee. That would be great.
Artie
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- December 1, 2014 at 5:37 pm
Thanks Laurie. I hope that's it. But since this tumor in my tibia bone at my knee has been hurting for over 6 weeks I think it might just be one of the tumors the pd1 has not got in line yet. They hadn't scanned that area since way before I started pd1 so dunno when it showed up or how big it used to be. I just hope it is just that tumor and not the ones in my spine. They told me those are shrinking so I hope it is just the one in the knee. That would be great.
Artie
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- December 1, 2014 at 2:58 pm
You know I am going to say the same thing Artie. My really bad node blew up around the 10th or 11th treatment of Pembro/Keytruda. It became very big and very painful. It felt like I was being stabbed repeatedly every 5-10 seconds for 24 hours. Then the following day it had grown so much so, that it was hanging out of me like a baseball just trying to get out of my arm pit.
The doctors did not warn me of this as a possibility of happening. I was a mess. I packed a bag and thought I needed to head to the ER for immediate surgery. The doctor then called and said that they think that this was the tumor dying. To take Tylenol and just wait it out until I could see them in a day or so….and wait for my scan the following week.
It was crazy…and I thought they were crazy to even think nothing was wrong. I was experiencing stabbing horrific pains…and you tell me to pop some Tylenol?!?!?! To me, they were nuts. And the Tylenol did nothing for the stabbing pains. But those pains stopped after 24 hours and the within two days the tumor was back inside of me. My doctors were shocked at how fast my tumor shrank back down from hanging out of me. They said that when the drug usually blows up a tumor, it usually takes several weeks for it to shrink back down, not just two days. For me, I tend to think that my healthy diet made a lot of difference there….with the speedy shrinking. At that time I was only eating mostly 80% raw fruits and veggies. No inflammatory or acidic foods. No dairy or meat or refined sugars. I of course do not know why it was such a speedy recovery, but I believe that is why.
I went into everything blind with this stage 4 disease. I didn't even know this site existed for my first year and a half of this diagnosis (I was diagnosed in Oct 2012.) I never went on the internet to investigate anything about Melanoma or the drug trials until a year after my diagnosis. I don't know why it didn't occur to me to do so, but for some reason I just focused on what I could do to reverse this disease. And for me that was to spend all my time going on the internet and investigating ways to reverse disease naturally and try and fix it myself.
Everyone is different. And back in 2012, so little was known about Pembro/Keytruda and how it would work in humans. So I took it upon myself to think that it wouldn't work, and that the only way for me to fix this was to be as healthy as possible and stop digesting so many bad foods and chemicals.
Anyway, I really hope that you are just experiencing the same blowing-up of the tumor and that it is just on its way to dying. 🙂 All my best on your appointment tomorrow Artie.
Laurie
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- December 1, 2014 at 2:58 pm
You know I am going to say the same thing Artie. My really bad node blew up around the 10th or 11th treatment of Pembro/Keytruda. It became very big and very painful. It felt like I was being stabbed repeatedly every 5-10 seconds for 24 hours. Then the following day it had grown so much so, that it was hanging out of me like a baseball just trying to get out of my arm pit.
The doctors did not warn me of this as a possibility of happening. I was a mess. I packed a bag and thought I needed to head to the ER for immediate surgery. The doctor then called and said that they think that this was the tumor dying. To take Tylenol and just wait it out until I could see them in a day or so….and wait for my scan the following week.
It was crazy…and I thought they were crazy to even think nothing was wrong. I was experiencing stabbing horrific pains…and you tell me to pop some Tylenol?!?!?! To me, they were nuts. And the Tylenol did nothing for the stabbing pains. But those pains stopped after 24 hours and the within two days the tumor was back inside of me. My doctors were shocked at how fast my tumor shrank back down from hanging out of me. They said that when the drug usually blows up a tumor, it usually takes several weeks for it to shrink back down, not just two days. For me, I tend to think that my healthy diet made a lot of difference there….with the speedy shrinking. At that time I was only eating mostly 80% raw fruits and veggies. No inflammatory or acidic foods. No dairy or meat or refined sugars. I of course do not know why it was such a speedy recovery, but I believe that is why.
I went into everything blind with this stage 4 disease. I didn't even know this site existed for my first year and a half of this diagnosis (I was diagnosed in Oct 2012.) I never went on the internet to investigate anything about Melanoma or the drug trials until a year after my diagnosis. I don't know why it didn't occur to me to do so, but for some reason I just focused on what I could do to reverse this disease. And for me that was to spend all my time going on the internet and investigating ways to reverse disease naturally and try and fix it myself.
Everyone is different. And back in 2012, so little was known about Pembro/Keytruda and how it would work in humans. So I took it upon myself to think that it wouldn't work, and that the only way for me to fix this was to be as healthy as possible and stop digesting so many bad foods and chemicals.
Anyway, I really hope that you are just experiencing the same blowing-up of the tumor and that it is just on its way to dying. 🙂 All my best on your appointment tomorrow Artie.
Laurie
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